The ATHN Data Quality Counts Grant is helping ATHN Affiliates enrich the ATHNdataset.

The promise of using data to advance clinical care and scientific discovery relies on data that is complete and accurate. The ATHN Data Quality Counts Grant provides the critical funding needed to build data management capacity across the ATHN Affiliate Network and enrich the ATHNdataset.

Thank You to Our Partners
The ATHN Data Quality Counts Grant is made possible by the generous support of The Hemophilia Alliance, The Alliance Pharmacy, and the Indiana Hemophilia and Thrombosis Center. We are grateful to our partners for supporting the ATHN Data Quality Counts Grant, which provides critical funding to ATHN Affiliates to enhance their data management capacity and enrich the ATHNdataset in support of blood disorders related clinical care, advances in public health, and quality improvement.

Awards
Awards are competitive. Successful applicants receive base funding plus additional funding depending on the number of records in which ATHNdataset Core Data Elements are updated in ATHN Systems during the award cycle.

Eligibility
Applicant organizations must be an ATHN Affiliate in good standing and a current user of ATHN Systems.

Requirements
Administrative requirements are outlined in the application. In addition, all recipients are required to use reasonable efforts to enrich the ATHNdataset Registry as follows:

1. Offer participation in the ATHNdataset Registry to all persons with blood disorders under the care of the Awardee’s treatment center.
2. Document ATHNdataset Consents in ATHN Systems.
3. Contribute validated data for all participants who consent to participate in the ATHNdataset Registry.
4. Each year ATHN includes grant award priority populations. Round 17 populations are:
   
   • Factor VIII or IX deficient participants with a focus on:
     • Participants who have received or expressed interest in receiving a gene therapy.
     • Participants with mild and moderate disease and a severe bleeding phenotype.
     • Previously untreated or minimally treated participants.
   • Patients receiving non-factor replacement therapies and rebalancing agents such as Hemlibra, Alhemo, Hympavzi, Qfitlia, and other products that may come to market during the award period.
   • Women and girls with blood disorders.
   • Patients with Type 3 von Willebrand disease (VWD) and clinically severe VWD.
   • Patients under the age of 18 years old who have had a VTE and are being treated with direct oral anticoagulants and all pediatric patients diagnosed with a pulmonary embolism.
   • Patients with rare coagulation disorders especially those with Antithrombin deficiency, Glanzmann thrombasthenia, Plasminogen deficiency, Factor VII deficiency, and Factor XIII deficiency.

Please download this list of current ATHNdataset core data elements.

The deadline for submission is April 22, 2026 at 11:59PM ET.

Contact support@athn.org to request access to the application form.

If you have any questions about Data Quality Counts, contact support@athn.org.